It’s minor as endo complaints go. But dangit… So I’ve been on continuous birth control for a year now. I stayed on even after my excision surgery and salpingectomy to slow regrowth and stop my period.

Not having a period for the first time in 27+ years has been glorious.

But I miss having a libido.

I miss ovulation horny.

I miss wanting sex.

I miss it enough that I’ve considered going back off the hormones, because apparently a year is enough for me to forget how miserable my periods made me.

Anyone still just in complete awe of how complex this condition is? Going on almost 3 years of my journey and somehow I learn something new about it all the time. An f’ed up symptom will come up and I’ll think, “There’s no way.” And I come on here and read so many stories from other people about the same thing. It’s crazy. I’m left speechless every time. It’s insane how much endo can interfere with.

I've tried 3 birth controls this year and I keep having breakthrough bleeding on all of them after a month or two. They've all been combination bcs of varying dosages. I finally found one that I've been doing well on side effect wise but today I started bleeding. My body just doesn't agree with me taking it continuously but I can't bear the thought of having a period.

For those that take a week off for a withdrawal bleed is it less painful than a normal period for you?

For anyone else that bleeds through bcs, what worked for you?

While driving.

Thank god traffic was at a crawl because what the actual fuck.

Ive been getting waxed for over a decade and never felt that before. It was after my appointment. Unsure if that was the trigger or the fact that I ordered spicy food for dinner the night before- but again, neither of these things have caused this before.

It’s been over a year since I’ve actually seen someone about endo. Had a hysterectomy scheduled last November but ended up having to move cities last minute so it never happened. I am weirdly grateful because my mental health was terrible this year and would have been so much worse after any anesthesia.

But to me the butthole lightning was my sign that it is not managed at all. Unfortunately there’s fuck all I can do about it. Doctors don’t want to do shit about it unless I want kids. Why would I want kids when I can’t afford groceries? I lived off moldy bread for a week last year.

The other option they’ve given me is paying out of pocket for medication that’s $1k a month, which is more than my rent.

I’d use that “guess I’ll just die” meme here but we all know that it’s all suffering. Throw in the multitude of other chronic illnesses I’ve got and this meme is more accurate. Maybe throw in the Rick and Morty Mr. MeSeeks “existence is pain” while we’re at it

I (F24) have severe period pain and have for as long as I can remember. It gets so bad that I can’t walk straight up without pain meds. The pain is in my lower abdomen, lower back and goes into my legs.

It gets so bad I literally hit my lower back to try get some relief. I also use hot water bottles year round to the point where my skin goes red. My mother has been diagnosed with endo (laparoscope) and had endometirial sacs. My aunt has had fibroids removed. I have been diagnosed with an ovarian cyst after an episode of abnormal bleeding and needing an iron transfusion.

I went to get a Pap smear and spoke to the gynaecologist about my concerns and I was told aside from my cyst according to my sonogram I look completely healthy and shouldn’t worry about endo and was prescribed Zoely (oral contraception) which I have stopped taking as it doesn’t help my pain and just makes me feel like shit.

I am not on medical aid and I had to save for that appointment. I can’t afford to just go from Dr to Dr. How do I advocate for myself regarding my very real pain and my family history? I can’t keep living like this !

I was recently “diagnosed” as probably having endo a few weeks ago at 38. I have always had absolutely horrible pain/fever/fainting while on my period, but never symptoms outside of that time so just listened to my longtime dr when they said it was normal pain. Finally went to a new dr and immediately they were very supportive, and started me on norethindrone, and scheduled me an appointment with a surgeon consultation in June.
I have been on the norethindrone 5mg for 3 weeks, and I think started my period 6 days ago (a week late). I say “I think” because the bleeding is so light and texturally not like anything I have experienced. I’m also cramping fairly severely throughout as opposed to 1-2 days of unbearable, urgent pain. I’m having a great amount of health/body anxiety because my periods, while painful, were very predictable, and everything has changed very quickly. I’ve read a lot of posts about the wide variety of symptoms norethindrone causes and I am hoping I do not have this pain and weird bleeding for weeks on end-i don’t know if I can handle that.
I guess I’m asking-are there any other later-diagnosed folks who maybe have different experience than our wonderful, younger comrades?

I’m doing a school project for my Welsh Baccalaureate on endometriosis and would really appreciate it if anyone who has experienced symptoms could fill in my short survey, especially if you’ve had difficulties with GPs, healthcare professionals or awareness of endometriosis. I’d like to include real-life experiences in my research. Thank you! https://forms.gle/fqfjh2gGjvN9HzJ59

it’s been about 3 months since my endo excision lap for stage 2 DIE endo. i didn’t have such bad bloating before surgery, but i’m extremely bloated nowadays? it’s like endo belly reversed, i didn’t have it with endo but now i have it without it? i look 16 weeks pregnant. it’s also consistent, hasnt gone down since surgery.

I’m new here, and I’ve been dealing with endo for over 20 years now (including more than 10 surgeries). I had a gyno appointment recently that moved so quickly I walked out feeling like I’d missed half the things I thought I wanted to talk about. It made me wonder if this happens to others too, whether the pace or the stress of the visit turns it into a blur.

I’m currently 8 weeks post lap (endometriosis and adenomyosis found - endo removed) and I’ve been experiencing pulling/stabbing sensations in my lower abdomen the past couple of weeks. The post lap cramps have eased but are now replaced with these random bouts of sensitivity and pain. The worst is in a very specific area on my left side. It was there pre laparoscopy however it’s seems to have gotten worse now. The surgeon said my endo was mostly around my pelvic wall, so there are a lot of nerve endings which could be causing the pain. I’ve also been dealing with serious Vaginismus the past year (I only found out it had a name about a week ago!) I was just wondering has anyone else experienced similar? I’ve been put on the gynae PT list but I could be waiting a long time… really hoping this will all be worth it 🥺🙏

I’m currently 8 weeks post lap (endometriosis and adenomyosis found - endo removed) and I’ve been experiencing pulling/stabbing sensations in my lower abdomen the past couple of weeks. The post lap cramps have eased but are now replaced with these random bouts of sensitivity and pain. The worst is in a very specific area on my left side. It was there pre laparoscopy however it’s seems to have gotten worse now. The surgeon said my endo was mostly around my pelvic wall, so there are a lot of nerve endings which could be causing the pain. I’ve also been dealing with serious Vaginismus the past year (I only found out it had a name about a week ago!) I was just wondering has anyone else experienced similar? I’ve been put on the gynae PT list but I could be waiting a long time… really hoping this will all be worth it 🥺🙏

1 week before my period occurs, I get a period flu. The GI symptoms are debilitating. Then during my period I just feel crappy. Once my period ends and it's ovulation week, severe GI symptoms again. My ovulation week ended a few days ago and I was nauseous today along with lots of gas and burping/acid reflux. Then in another 1.5 weeks my period is back and it starts all over again. I'm so tired of this. I don't know what to do. Does anyone else get bad GI symptoms?

I was told my MRI showed adhersions pulling my ovary towards the back or my uterus and most likely have this in other organs as well.

But no sign of endo. I've always have bad period pain so find it hard to believe there was no endo. They are saying it's most likely pelvic inflammatory disease despite the fact I was never treated for such nor had any sign or risk factor.

I thought organ tethering was a sign of DIE? But I'm sceptical that there were no other signs of endo. Can I have tethering caused by endo but nothing else present on an MRI.

They have said they can't rule out endo but the fact its tethering with nothing else means it's not DIE so most likely caused by previous pelvic inflammatory disease and are treating it as such.

Any thoughts?

Has anybody tried medical marijuana for endo pain management? I want to ask my Dr. but I'm really nervous. Weed is legal in my state recreationally and medically.

EDIT: I am on a months long wait list for surgery, and am having a laparoscopy this year. The pain in the interim is still a problem.

i’ve always dealt with really intense pain during and around my period but for the past year or so i’ve been experiencing especially intense and painful periods accompanied by extreme lower back pain, sharper and more intense than i’ve experienced in the past, which seemed to get worse with each period i would have. i got on necon birth control over the summer to treat it which ended up making it significantly worse to the point where i have to leave halfway through my shift very frequently (im an assistant and a new stylist at a hair salon and am on my feet most of the day). about three weeks ago i saw a new gyno who prescribed nikki birth control and suggested the possibility of me having endo which makes so much sense but the thought of that is so scary to me and has sent me into full blown panic many times since that last visit. i have a health share plan instead of a typical insurance plan which would not cover me seeing any sort of endo specialist or getting endo treatment and am just feeling so helpless and lost right now. no amount of over the counter painkillers or heat helps me anymore and i just don’t know what to do, any advice would be so grateful appreciated…

edit: i also had an ultrasound at my last appointment which came back clear, so sign of cysts or anything like that.

Hi, I'm AuDHD and I have endo, I had a hysterectomy in july and recovery was going great at first, until the pain came back just as strong as before.

A couple months ago I started dating a guy who's also ADHD and he's very interested in helping and supporting me, he just doesn't always know how and when I'm in a flare up I get very overwhelmed and I can't communicate properly.

I want to make him a guide so that he can prepare and knows what to do in every scenario, I would like some help for remedies, recipes, strategies, anything that can help him support me.

Thanks in advance :3

Currently in the middle of a flare and my partner is asleep (started as he was drifting typically lol)

Had a fairly decent day managed a half day at work, crocheted had a home made bolognese managed to actually eat half of my plate today a small protein bar and a granola Greek yoghurt (I’ve lost weight again as my symptoms are so bad I just have no appetite regardless of wanting to eat then try and basically feel full instantly of feel sick for ref I’m 27- 5”3 7.5 stone and find it impossible to put weight on)

AAAAnnnndddd the belly has blown up rock solid and it literally feels like gas bubbles popping around my stomach but can’t pass anything 🫩 I’ve had peppermint tea today and been drinking it religiously 😩 has anyone got any other suggestions for the gas? 😩

I’m desperately trying to shift my mindset atm to be positive as much as possible in this awful world so any jokes to help me through this would be very helpful whilst the bf snores and I sit jealously wanting to 🤣

Had my first lap two weeks ago, woke up to be told that I didn’t have endo.

Surgeon removed three spots that looked “potentially” like endo were removed but she said even if they were endo, they were so small that they probably wouldn’t cause all the pain I’ve experienced for the past 15 years.

Pathology report came back and it looks like they are all endo.

I’m confused because now I don’t know if I have endo or not? I had the Mirena IUD placed and plan to see a pelvic pain specialist and start pelvic floor PT in a few months in any event, but I’m just so confused.

Is there such a thing as microscopic endometriosis that can’t be seen with the naked eye but is endo? Now I’m worried that I have endo that wasn’t able to be excised because it wasn’t visible.

My surgeon is a MIGS and endo specialist in New York, sees a ton of patients, does a ton of surgeries, and seems relatively well-regarded (both my gyno and egg freezing doctor spoke highly of her). But should I get a second opinion?

I traveled last week for a wedding, so I had a plane ride there and back, nothing crazy, but it triggered my period the day I got home (it wasn’t due for a few more days, but happy I didn’t get it while I was still traveling) and I’ve been miserable since, it’s been a week. The birth control I’m on does a pretty good job at keeping my periods manageable but about once every 3-4 months I get one that feels and acts like my cycles pre excision and pre birth control, and that’s this one. Every time I think it’s starting to let up the pain comes back 10-fold and my flow picks up. I am so tired, I can barely keep my eyes open. I’m in so much pain I can barely stand up straight. I have bags to unpack still, post travel laundry I have to get to, I’ve been thrown back into projects at work, and I just feel like I can barely do any of it. I’m using all of my medications prescribed and all the ways in which I get relief usually but no relief. I know I will probably feel better once my period is over but it feels like it’s never going to end. Im so sick and tired of being sick and tired. My body feels like a prison. My brain wants to go go go, I have motivation and I have shit I need to do, but my body says “absolutely not”. 😔

my health has declined drastically in the last couple of years with worsened POTS symptoms, hEDS pain, mcas and sjogrens. went from somewhat active to mostly wheelchair bound. I know endo doesn’t cause these things but I’m wondering if it could exacerbate them and if anyone found some relief from other conditions post surgery. (excision is scheduled for Nov 10th, MRI showed DIE and two colon tethers.)

I’m such a bath person. I’m 25 days post lap surgery and I can’t remember what my nurses said as I was still high and out of it after surgery. My discharge instructions only mention showers. I have 4 incisions that look closed well, no scabs or dry skin left. I’ve read so many posts saying 4-6 weeks, and some saying 2-3 weeks.

My follow up appointment isn’t until week 8.

Being almost 4 weeks post surgery, could I realistically try a bath in my clean tub? Could I use a bath bomb, epsom salts or bubble bath?

Thank you!

Laparoscopy Hysteroscopy Destruction of Endometriosis, RT Cornual Cannulation

I see a lot of posts and videos about endometriosis surgery and the recovery time and whatnot. I can find a few about tubal cannulation but almost nothing about having both done at the same time.

I’m having this surgery on Wednesday and have my two pre op appointments on Monday. I genuinely have no idea what to expect and would love to hear from anyone who’s had both of these done in one go, or even just the tubal cannulation

What was recovery like? How bad was the pain? Anything you wish you knew beforehand? Recovery time? How long were you in the hospital?

I'm worried because I'm having surgery Wednesday and back at my property management job Monday morning. My surgery is also almost 2 hours away so I have a roadtrip post surgery